Common data elements to standardize genomics studies in cerebral palsy.

ABSTRACT:

Aim

To define clinical common data elements (CDEs) and a mandatory minimum data set (MDS) for genomic studies of cerebral palsy (CP).

Method

Candidate data elements were collated following a review of the literature and existing CDEs. An online, three-round Delphi survey was used to rate each data element as either 'core', 'recommended', 'exploratory', or 'not required'. Members of the International Cerebral Palsy Genomics Consortium (ICPGC) rated the core CDEs as either mandatory or not, to form the MDS. For both the CDEs and the MDS, a data element was considered to have reached consensus if more than 75% of respondents agreed.

Results

Forty-six individuals from around the world formed the Delphi panel: consumers (n=2), scientists/researchers (n=17), medical (n=19),

SUBMITTER: Wilson YA 

PROVIDER: S-EPMC9790418 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature